“I am not my Ehlers-Danlos”

Project Description:

I remember the day I was diagnosed so vividly. I remember sitting on the exam table at the pediatrician’s office facing the doctor as he told me I have Ehlers-Danlos Syndrome (EDS). I have to say my diagnosis was not earth shattering. I was thirteen years old and had no idea what the diagnosis meant or how it was going to change my life. The next five years the disease crept up on me and snuck into every aspect of my life.

EDS is a connective tissue disorder that causes joint hypermobility, dislocations and can lead to many other complications. I live with chronic pain, chronic fatigue and chronic fear that it is all going to get worse. I have to plan each day meticulously to avoid putting extra stress on my body. Living with EDS is mentally exhausting because every movement is a calculation of risk and reward. I find myself worrying about things I never thought about before my diagnosis; can I sit through this two-hour lecture, will I dislocate a finger during the final, are these doctors prepared to handle me? Every choice I make, from the weight of my laptop to the type of fork I use, revolves around my EDS. As I look towards the future I have to plan how I am going share my life with this disease and still maintain my independence. EDS is hereditary meaning there is a fifty percent chance my children will also have EDS.

The road ahead is full of impossible decisions and days full of pain and frustration. But it is also filled with incredible people and beautiful experiences. While I would never wish for EDS it has made me into a better person. I no longer take my health for granted. Living with a chronic illness has shown me what is really important. I am reminded everyday of the support that surrounds me and I am so lucky not to be on this journey alone. EDS has shown me that everyone is fighting their own battles. It has taught me the importance of kindness, patience and forgiveness. While EDS has brought me some of my darkest days it has also brought me some of my most beautiful ones.

My perspective has changed because of my Ehlers- Danlos but this view is still a beautiful one.